I was asked to write my story of Lyme, but I really don't know where to start. Do I start the first time I was bitten by a tick, at age 10? Or do I begin when I first started to get symptoms at age 25? I think I will begin at 25; that will be easier for my Lyme brain to remember. Here’s the short version of a very long story.
One of the weirdest of my symptoms is my total inability to regulate my body heat. It can be freezing outside and I’m sweating, and it can be a tropical day, and I’m freezing. One of the first things I consciously noticed was my body heat dilemma. I vividly remember lying in my bed, when I lived in Spokane, in the middle of summer, freezing. Now, if you’ve never been to Spokane, you know it gets mighty hot there in the summer. It’s a temperate Ponderosa pine desert, for lack of a better description.
On this particular day, it was about zero humidity and about 95 degrees F out. I was lying face down on my bed, with a sheet, two blankets and a comforter over me; my arms pulled in to my chest, and my trusty cat, George, lying on my back. I think he always knew something was wrong; after all, we were two of a kind. He had the feline version of HIV and I had taken care of him for years. My sick kitty was now worried about his sick human, curled perfectly where I needed him to keep me warm. I was shivering, so cold it hurt, in 95 degree weather. I knew something was wrong, really wrong, but according to the doctors, nothing was wrong with me. How can nothing be wrong when I’m freezing and it’s Africa hot out? Preceding the chills were severe hot flashes, lasting hours, and making me so nauseous I would sometimes vomit. I knew if I got hot, the cold would follow. I still get these episodes. I told doctor after doctor that something was wrong, and was brushed off. One even laughed in my face and called all the nurses over to laugh at the 25-year-old going through menopause.
So, I gave up. I didn’t go back to the doctor for two more years. My symptoms got worse. I was tired and dizzy. Hot, cold, nauseous, dry skin, itchy and sick all the time. I had had unsafe sex when I was younger, and HIV came to mind. Crap. I got tested--negative. "Are you sure? Test again." Negative. What the hell is wrong with me? One person gets the sniffles around me and I’m sick for a week! I’m so tired, I hurt, what is wrong with me? I can’t concentrate, can’t think, so tired, so tired. Ignore it! There’s nothing wrong with you! It’s all in your head! Don’t go to the doctors, they’ll just laugh at you, tell you you’re a freak. It’s all in your head, there’s nothing wrong with you.
I went through Forestry college with undiagnosed and untreated Lyme disease. When I started, I maintained honor roll. For three years, my grades didn’t drop below a 3.5 (4.0 is the highest you can get). Then, late junior year, I crashed. The Lyme caught up, only I didn’t know what it was. Nothing was wrong with me. I was in so much pain. Muscle pain, joint pain, my skin burned or froze, neither one was very pleasant. I was so tired, and my ADD got so bad that I couldn’t think of one thing at a time. It was like an angry mob was screaming in my head. So many voices! My grades dropped to a 1.8. 1.8! I’d never gotten a D in my life! Now, D was my average. I was flunking out of college, and I was almost done. I couldn’t let this happen! I needed a 2.0 to graduate. I did it, barely, with help from every dang teacher and counselor I could get help from. The day I got my degree, I had a 2.01 GPA. Crap grade, but it was passing, and I was dying. Always sick, always tired. I trudged on. Because nothing was wrong with me.
I graduated with a degree in Forest Resources, and went to work. Great job, very physical. I was in pain all the time. I worked through it. So tired. So painful. My co-workers would go out after work, and it was all I could do to drive home after work and not crash the car. They stopped asking me to go. I couldn’t. If I wanted to go out, it had to be on Saturday night, and I couldn’t do anything Saturday. If I wanted the energy, I had to store it up. If I went out, I didn’t even get dressed until a few hours before I left. If I did, I would end up doing something else and not have the strength to go out that night, and I would have to say I couldn’t go…again.
Long story short, I went to Wisconsin to participate in the AIDS Walk there with my friends Bob and Teresa in 2009. They introduced me to their friend Della. Della saved my life. During the walk I was in pain, and dizzy. I was so dizzy I held on to Teresa so I could continue walking. I felt like an idiot. There’s nothing wrong with me! Afterwards, we went to lunch and I was rubbing my legs when Della asked what was wrong. So I told her. My legs were on fire. They felt like boiling hot water had been poured over them, and they hurt. Rubbing them helped. Della gave me a couple pamphlets on Lyme and made me promise to get tested. Della has Lyme disease and recognized one of her own.
When I got home, I went to the doctor and did the lab tests. $700 worth of blood tests, which aren’t covered under any insurance. Not that I have insurance anyway. The doctor called me in and said the lab tests confirmed her prognosis. I had “glaring” Lyme disease. Old antibodies, new antibodies and almost every symptom on the charts. I was off the charts. How was I still alive? I’m healthy…except for the Lyme. That’s the only thing that kept me alive. Parents who taught me to eat right and pay attention to my body, my drive to keep pushing no matter what, and a physically demanding job--those kept me alive. The same vocation that probably gave me Lyme saved me by forcing me to be healthy. I love my job and will keep doing it.
So now, I take up to 18 pills a day, plus anti-inflammatories when needed. I take a liquid multi-vitamin because the pills make me even more nauseous than I already am. I am on a gluten free, high fructose corn syrup free, sugar free, soy free diet. I shouldn’t eat soft fruit or drink fruit juice either, because of the sugar content, so I don’t. I can eat meat, fish, eggs, dairy, green veggies, avocados, tomatoes, brown rice, nuts and quinoa. I’ve gotten very inventive with my food; I’ve learned a whole new world of cooking. Most things that are pre-made have something in them that I can’t eat, so I HAVE to cook. I don’t have a choice.
I will have Lyme forever. I don’t have the kind that can be cured; it’s in my tissues and my blood--it’s in everything. If I have children, it will pass on to them, so I have made the decision that I will not have children. I may be able to pass Lyme to my partners. I will tell my partners that the evidence of Lyme being an STI is inconclusive, so that my partners can make up their own mind about it. I will tell my story to anyone who will listen, and the story of Lyme. I founded a non-profit to help fund my speaking. My first venue is at the University of Washington to my fellow Forestry Students. I will fight, I will survive and I will live because a tiny bacterial spirochete, in its quest to make me weak, has made me strong.
Ashley Bouck, Washington